Doctors call them heart sounds. The sounds they hear as blood flows through the heart, as valves open and close.
There are some other heart sounds, in my own heart. They are the sounds, the lives of those born with bicuspid aortic valves. Others have another kind of aortic disease in their chests. They also have entrusted their life stories to me. Too precious to be lost or ignored, I share their heart sounds with you here.

Saturday, October 4, 2014

Heart Sounds and Bicuspid Aortic Valves - My Beginning

Fall on Palomar Mountain

As I begin this blog, it is fall.My thoughts go back to another time today.Sometimes I think it was just yesterday,but decades have gone by. I am remembering the time when I met and married a man with special heart sounds.

And that was my "heart sounds" beginning.

Loving a Man with a Heart Murmur

When do we lose that invincible feeling of our youth? I do not know, but I do know it is a good thing to have that courageous feeling, that one can face anything, especially together with the love of our life. We might miss out on a great deal of life otherwise.

When we first met, my husband told me that he had a heart murmur. Over the years he has smiled at me and reminded me that there was full disclosure of his "bad heart" from the beginning.

I, on the other hand, have always known he has a heart of gold.

Is a Heart Murmur Really that Bad?

No, a heart murmur did not frighten me at all. It did not seem "bad" to me. He and his sister were both in the hospital as children, and rheumatic fever was named as the culprit. One of my sisters had that too, leaving her with a little murmur, and to this day it has not affected her. A special friend to our family, a woman, was quite elderly in my eyes (in her 70's!), when her mitral valve was replaced due to rheumatic fever damage. I was sure we would have many blissful decades together before reaching such an exalted age, and by then, who knew what miracles might be possible.

No Signs of Trouble?

Yes, there was full disclosure of his heart murmur. It could not be hidden. My ear to his chest was all that was needed to hear a tremendous rumbling there. Sometimes I look back to our early life together, wondering if there were any signs of what was to come. Like many others born with a "special" aortic valve, he appeared very healthy, took good care of himself, exercised, and was high energy. Even a slight decline would still leave him far beyond "average". (Those born with bicuspid aortic valves are far beyond "average" in many ways, but we had never heard those three words back then.)

A few years went by, and we relocated to a completely new area. I well remember at that time thinking I could not bear to listen to his heart anymore, the roaring was so dramatic. He seemed very healthy still. There seemed to be no reason to visit a doctor. We should have, but we did not know it.

The only hint, a very slight one, was when we were went for a walk, exploring our new neighborhood. It was a hilly area, and coming up a fairly steep incline, he told me he felt something in his chest. Nothing more bothered him, and we did not think any more of it. (Many years later, the same thing would happen with a mechanical valve inside his heart. That is a story for another time.)

All of a Sudden, Big Trouble

It was in the winter, and I was recovering from the flu. I was also about to start a new job, with a new company. When my husband got sick too, we thought he had caught the same bug from me. If only it had been that simple. We did not have a doctor. We were still quite new in the area and had not needed one.

He seemed to get better, but a nasty cough persisted. During that time, someone gave us the name of a doctor. We went. There was no help there at all.

All of a sudden he had terrible, soaring fever. He would shake violently as it rose. This kind of crisis always seems to happen at night and on week ends! We went to the emergency room of the hospital near us. He hated to go, sick as he was. I re-assured him that they likely would not need to keep him, just give him some medicine.

I remember them asking him why he was there. He was muscular, strong, in his prime. Anyone could see he was in good health! (I didn't know then that this is a common problem for those born with bicuspid aortic valves. They generally look very healthy, even when they are not. It is not an advantage in getting the attention of physicians used to seeing obviously sick people.)

They did chest x-rays and blood work. We were told there was a "little pneumonia" in one lung, and given a prescription for an antibiotic. They also gave us a list of local doctors and told us to follow up with one of them.

Searching for Help

The antibiotic from the ER was not helping. On Monday, one of the doctors on the referral list could see him quickly. I am forever grateful for the carefulness of that doctor. He called the hospital and had the x-rays re-read and the blood work reviewed. My husband had full blown pneumonia in both lungs and an astronomically high white blood cell count. He told us he was surprised anyone that sick was allowed to leave the hospital. He prescribed erythromycin to fight the pneumonia, warning us it causes nausea in some people. He also asked my husband about his heart murmur - did he know which valve it was? My husband said no. He gently told us that it is always a good thing to know about the cause of a heart murmur.

Our First Fight for Life

This is the first fight for life that we shared together. The erythromycin was helping, but gave him horrendous nausea. We were told there was only one other antibiotic, if this one did not work. The doctor admitted him to the hospital, where the drug was given by IV initially, until red streaks went up his arm. They found a combination of drugs to fight the side effects so he could take the antibiotic. I remember the kindness of the nurse who let me rest in the other bed in his room. This hospital has a gorgeous ocean view and fantastic food for the patients. It was mostly lost on us.

It is approaching 25 years ago now. I remember it like yesterday. It taught me to respect infection, particularly pneumonia. Jim Henson, creator of the Muppets, died of pneumonia that same year.

My husband had his first echocardiogram in that hospital. At that time, echo machines had sound, and I listened to his heart sounds as the technician worked. The doctor wanted to know more about his murmur. We were not told just then that very likely it was at the root of all his troubles.

He was released from the hospital, a shadow of himself. The bulging muscles had melted away almost overnight. It was a relief to be home, on the road to recovery. Or so I thought. He was not there beside me when I awoke in the morning.

He was sitting up in a chair, so he could breathe.

The doctor was not surprised when I called. My husband was in full blown congestive heart failure. He was going to need heart valve surgery. The doctor sketched a picture of the heart and its valves, teaching us about the aortic valve and what happens if it does not work well. Blood was not getting through properly. It helped us understand. He sent us to a cardiologist. And in that cardiologist's office, we heard the words "bicuspid aortic valve" for the very first time.

That is the next part of my husband's story. A story for another day.

For now, his story has a simple message: heart murmurs are important to understand, and aortic valve stenosis in those with bicuspid aortic valve may not express itself in the typical way. Don't wait until there is a crisis to find out about your heart. My husband did not have the symptoms they often describe, like shortness of breath or chest pain. Later we would learn that his left ventricle was greatly over taxed, fluid was quietly gathering in his lungs. A person in this condition would be expected to have symptoms. My husband dd not, until rabid pneumonia and a rapid descent into full blown heart failure struck him.

6 comments:

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My grandson was just diagnosed with BAV.He is 9. He has had pneumonia 2x in his life, at 3 and at 6. He has had the flu 2x and the worst case of it at 6. This is scary for us.I was told that he would be fine, just have the EKG and Echocardiography once a year. Your story here makes me wonder if BAV was causing the pneumonia.

As a sign of gratitude for how my husband was saved from Pneumonia , i decided to reach out to those still suffering from this.My husband was diagnosed of Pneumonia in 2013 and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, he always have headaches , and he always complain of sore throat . we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and he left the contact of the doctor who had the cure to Pneumonia . I never imagined Pneumonia has a natural cure not until i contacted him and he assured me my husband will be fine. I got the herbal medication he recommended and my husband used it and in one months he was fully okay even up till this moment he is so full of life. Pneumonia has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks admin for such an informative blog.

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Arlys Velebir

Chairman & President of BAF

Disclaimer

Arlys Velebir is the President and Chairman of the Bicuspid Aortic Foundation. The statements and opinions presented here are entirely her own personal thoughts, and do not in any way represent the position of the Bicuspid Aortic Foundation, its Board of Directors, Scientific Advisory Board, or volunteers.